Development and implementation of health care transition resources for youth with autism spectrum disorders within a primary care medical home

Abstract

Transition from pediatric to adult health care systems presents unique challenges for adolescents with autism spectrum disorder who often have complex medical and mental health needs. Without a coordinated transition plan, pediatric providers often continue to provide care to young adults with autism spectrum disorder beyond the scope of their medical training. Adult providers may be unwilling and untrained to accept care for young adults with autism spectrum disorder. This quality improvement study identified baseline transition-related practices within a pediatric medical home practice and developed a model to promote transition to adult heath care for patients with autism spectrum disorder. Participants were 251 patients with autism spectrum disorder aged 12–21 years. Baseline data revealed limited and inconsistent communication directed to patients and families regarding transition. An evidence-based and replicable transition checklist, templated documentation, and resources geared to patients aged 12–21 years were developed. While improvement was noted in number of visits addressing transition, medical providers skipped or deferred transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to defer to social work to address transition, and difficulty identifying adult providers with whom to collaborate regarding care needs. Lay abstract As adolescents become adults, they typically change from seeing a pediatric health care provider to seeing a health care provider who specializes in working with adults. Adolescents with autism spectrum disorder may have more difficulty finding an adult health care provider who is trained to address the varied needs and medical and mental health issues that often are seen with autism spectrum disorder. Without careful planning for transition to adult health care, patients may continue to be seen by pediatric providers who may not be familiar with adult health needs. This quality improvement project focused on improving transition to adult health care by creating varied supports for the patient, family, and the health care team and putting them into action within a pediatric medical practice that serves over 250 adolescent and young adult patients with autism spectrum disorder. Before the supports were put into place, patients and families received limited and inconsistent communication to help them with transition. While the supports helped increase the amount and quality of help patients and families received, medical providers skipped or put off transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to have social workers discuss transition, and difficulty identifying adult health care providers for patients. This suggests more work is needed to both train and partner with patients, families, and health staff to promote smooth and positive health transitions.

Programs for Care System Transitions in Mental Health: A Systematic Review

“…The majority of the research studies occurred in the United States (Binswanger et al, 2015;Gilmer et al, 2012a;Hartwell, Fisher, and Deng, 2009;Harris et al, 2020;Hourani et al, 2012;Sheidow, McCart, and Davis, 2016;Tsai and Goggin, 2017;Wang et al, 2012;Wenzlow et al, 2011); three took place in the United Kingdom (Jarrett et al, 2012;MacInnes et al, 2021;Moosa and Sandhu, 2015), two in Canada Kidd et al, 2019), one in Australia (Kinner et al, 2016), and one in New Zealand (McKenna et al, 2015).…”

“…Five studies were RCTs (Binswanger et al, 2015;Jarrett et al, 2012;Kinner et al, 2016;Wang et al, 2012), six studies examined observational prospective cohorts Hourani et al, 2012;Kidd et al, 2019;MacInnes et al, 2021;Moosa and Sandhu, 2015;Sheidow, McCart, and Davis, 2016), and four studies were observational retrospective cohort comparisons (Hartwell, Fisher, and Deng, 2009, a study of transition episodes rather than individuals; Gilmer et al, 2012a;McKenna et al, 2015;Wenzlow et al, 2011). Harris et al (2020) and Tsai and Goggin (2017) offered cross-sectional analyses of intervention uptake and patient experiences.…”

“…One study involved a veteran population (Tsai and Goggin, 2017). Seven interventions were for children and/or adolescents transitioning to adult services (Gilmer et al, 2012a;Harris et al, 2020;Kidd et al, 2019;Moosa and Sandhu, 2015;Sheidow, McCart, and Davis, 2016). Two of the nine prison-related studies crossed into other populations: Tsai and Goggin (2017) assessed a veterans-only prison unit; Sheidow, McCart, and Davis (2016) looked at a program for mentally ill adolescents with justice involvement.…”

Autism and physical health across the lifespan

“…It is challenging to consider this growing list of elevated health risks when the transition to the adult health care system is so daunting (Ames, Massolo, Davignon, Qian, and Cerros, 2021; Harris et al, 2021) . Medical providers skip or defer transition discussions and do not show consistency in their approaches.…”

National Profile of Caregivers’ Perspectives on Autism Spectrum Disorder Screening and Care in Primary Health Care: The Need for Autism Medical Home

“…Medical homes are cost effective, improve providers’ and patients’ satisfaction, reduce the psychological and financial burden on caregivers, and children are more likely to receive high-quality care [ 12 , 13 , 15 ]. Medical homes also provide healthcare providers trained to address medical and mental needs for ASD patients transitioning into adolescence and adulthood [ 16 ].…”